Hi Carrie,

I just wanted to say DO NOT give up hope yet, especially if everything else is normal except for the lung fluid.
From what I can tell you are pretty much in the same situation we were, only difference was we found out about the pleural effusions at 20 weeks.
We also had a billion tests done which all came back normal. Still don't know the cause to this day, and never will.
I would talk to your doctor about the in-utero operation that can be done to insert chest drains. It basically drains the excess fluid back into the amniotic sac to prevent the major organs shutting down from too much pressure. All done under a local anaesthetic.
Also there is steroid treatment to help baby's lungs if you go into preterm labour.
It makes me irate that the doctors have told you there is no hope AT ALL. This is just plain wrong, our boy is nearly 9 mths old now and look at the other success stories on this site alone. There is always some hope even if the odds aren't great.
I hope you can find a doctor who is willing to give you all the help you need.
Hang in there xx

Hi Carrie,

Very sorry to hear about your diagnosis. There are some positive things that your doc may not have old you, for example that @18 weeks the hydrops has been diagnosed relatively early which means you have more time an chances to find help and solutions etc.

I was angered to read this quote though -

That doc is giving you the opposite of false hope - that is overly negative! I hate to read of docs putting pressure for abortion. Abortion is surely the last thing on your mind right now. Saving your little angel must be the priority :)

I agree with Katie 100% too...

I hope to see you around here again soon... it's good to have a chat!

Good luck and best wishes,

Dan

Thank you for your replys to my post. Katie - Do they leave the tubes in the babies chest through out the pregnancy, or do they just drain the lungs, and take them out?
We are seeing the Head Pediatrician in Tampa tomorrow afternoon, I will post an update after we see him!

Thanks again for your support!
~Carrie

Hi Carrie,

The theory is that they leave the drains in for the rest of the pregnancy. However I went into labour 3 days after surgery, at 32 wks.
I don't know if this is because of the surgery, or because of other issues involved (the placenta was also disintegrated) so I may have had still had preterm labour without surgery.
After he was born they took the drains (shunts) out and put in some other tubes to continue draining the fluid. You can see them in my first pics in my thread. Unfortunately one of the shunts had moved right inside the chest cavity and had to be surgically removed a few weeks later. Not a big deal though, it was just sitting there doing nothing.
Good luck with your pediatrician appt!
xxx

Hi Carrie / Katie,

The shunts sound scary and painful but also effective. My son had almost 0 amniotic fluid around him at all in the later stages which suggested the cycle was going very wrong inside the womb with all if the fluid inside Lennox and none outside around him... so from my experience I also have to agree with the idea in principle of using shunts to redistribute fluids to the right places.

You must be very brave to go through this... love is a powerful thing - I'm sure you can make it so keep up the good hopes! I wish I could take the pain instead - it's really hard for fathers having to stand by in this kind of situation. We can do more than just watch but I think your husbands will agree with me when I say we wish we could "carry" the burden a bit. I'd gladly have needles jabbed into me to save my baby... or do whatever it takes.

Best wishes Carrie - do keep us updated and if you need anything just let us know.

Looking back at my last post i'm feeling a bit weird being the only father chatting on here! You could invite your hubbies to sign up and have a chat! :D

ha ha... don't feel weird - it's your site, you can do what you want!

I'd invite Duncan to have a chat but being English he is naturally miserable and would be the voice of Doom! :lol:

Ditto Carrie..... I wanna hear how your appointment went!

Well unfortunatly, I don't have good news.... Here is the email I sent to my family and friends...

We just got home from meeting with the specialist in Tampa.

After a long sonogram (3 hours) they confirmed the Hydrops that the previous doctor had seen. They explained in more detail to us why her condition is so fatal... she doesn't just have fuild in her lungs, it is all over her body. Though her heart does look fine.

We were told at this point they do not think there is any fetal treatment they can do to help her. We are having many more tests done to find out why this is happening and if it might happen in future pregnancies.

For now, they are giving our little angel a very low survival rate. We still have faith in the Lord, and are leaving everything in his hands. Please keep us in your prayers.

~Carrie

So I soften it up a little for them... but here is more detail in what happened...
ALL the doctors are pushing for me to terminate the pregnancy before 24 weeks. I told them that simply was NOT an option. They look at me like I am crazy. The doctor yesterday even went as far as telling me how horrible it will be to delivery this baby... that I am putting my own life at risk (I will have to have an old style c-section, where they cut up and down instead of side to side.) She also told me I am risking giving birth to a very sick child that might suffer and be on machines the rest of her life.

We are not conidates for the chest tubes because they said the fluid is also in her stomach. They did find two fluid pockets, or cysts like objects on the lower portion of her head... around the back of her throat. They have NO IDEA what it is. They are going to look in more detail with all the doctors and get back with me.

They also sent the fluid from my amnio for additional testing. Basically, they told me the only thing they can do now is just find out WHY this is happening. Other than that they don't believe she will survive and are really trying to get me to terminate the pregnancy.

I don't think my husband would come on here... he is so private with everything in his life. I don't think he would be able to open up to stranger like I can. But you are right... I can see the pain in his eyes, though he doesn't cry or talk much about it. I think he is trying to be the stronger person to make sure our whole world doesn't crumble around us.
He is thinking about terminating the pregnancy, only because he is so worried about me physically and emotionally. I think the doctor scared him yesterday, and now he is afraid to lose me too.

I am at work now, eating chocolates to keep me going! My next appointment is on Monday. I will update you more then!

~Carrie

Dan ~ When did you find out Lennox had hydrops?

~carrie

So sorry you got bad news Carrie. I hope your little one can prove them all wrong. I will be thinking of you guys. We are all here to listen if you need to vent xxx
Wish I could share some more chocolate with you!

Carrie - my son was born on August 5th, just one month ago, at 29 weeks with hydrops. I went in to the hospital after he hadn't moved all day, they didn't know what was wrong other than he had a heartrate but was completely nonreactive. They did an immediate emergency c-section (the "old" way - up and down cut). The C-section was fine... I'm healing fine and it was actually very quick at first to get him out. Once he was out they found the hydrops as well as other preemie issues. He did almost die, the doctors expected him to, but within just over two weeks he was off the ventilator, and he is now progressing well. I don't intend to provide "false hope", however my husband and I have seen what God can do with out little miracle baby. And with the c-section, even if it comes down to losing your little one, you'll be able to hold her even for a short while. BUT, we are absolutely praying for you and your husband and your doctors and for that little angel. I'm so sorry you're going through this... we'll pray and ask everyone who prayed for our son to do the same for your family.
~Jen

Jen...
Thank you so much for sharing your experience with me! I am praying for your little boy!! From what my doctors have explained to me is it sounds like your son become aneamic. Do you know if that is the case?
My little girl (Viviana is her name) has a low survival rate (actually now it is at 0%) because the hydrops was developed so early on. Or at least that is what the doctors say. They told me most cases that survive hydrops isn't developed until end of pregnancy.

I am so over doctors right now. I wish abortion was illegal... then doctors would think outside the box and try and save these babies... instead of give them no hope. My plan is to annoy my doctor until they agree on giving Viviana chest tubes in the womb.

Anyway, Thank you again for sharing!! I am praying for your little man to be healthy and come home to you soon. Please keep in touch, I would love to know how he is doing.

~Carrie

I agree 100% on this - there is a defeatist attitude that could never be seen as conductive for saving lives or advancing the science and understanding of medical problems!

[attachment=0]n744168200_146790_2638.jpg[/attachment]

Above pic is Lennox at 22 weeks. At 7 1/2 months the edema - fluid build up under the skin - was totally gone.

I am confused.... where did the fluid go? Did his hydrops cure itself... or was it only the edema that went away?? Also, where else did he have fluid? Do you think he would have survived if it wouldn't have been for your stupid doctors that delivered him?

I just can't believe how much I use to trust doctors... now their word is crap. It's so frustrating!

Hi Carrie,

The Edema just disappeared and I really don't have any explanation. I'm also not sure when it went away as we only had one 3d scan that showed the build up under the skin (look carefully and you can see he is SMILING! :) )

In a burst of ironic humor I previously joked that Lennox looked like a baby alien in previous scans before the hydrops was even detected. Only later to realize my pun was out of order when he really showed up in a scary condition at 22wks.

His Ascites (fluid in the abdomen) and pericardial effusion (fluid around the heart) I presume was all still there when he was born however I conclude that he could have survived (actually he DID survive but i don't know how long for) because his heart rate never got any worse and his growth never stopped during his time tummy-side.

I have all the records of the fetal heart rate and growth rates taken weekly. He was a bit "pear shaped" by the hydrops which is normal for babies with hydrops. However he was far away from a bad case - his thighs and muscles were huge and remind me of how my mother described me as a baby boy! (I had a forceps delivery because my shoulders were so wide and the doctors commented that i'm a future rugby player!).

Bad cases of 0% chance of survival are actually easy to spot. This is sad but true and made me burst into tears many times, but when you look at it you can get the idea. A real 0% chance baby won't look like a baby at all - it will look like an alien with very very severe issues. These images are available if you do a google image search on hydrops babies and scans and photos etc. They are scary but what comes up is the most extreme cases with the most 0% chances of survival.

From what I gather if a baby is born strong and the heart rate is good then the chances are on the plus side as compared to a baby with gradually weakening vital signs and movements.

I don't know my sons APGAR Score and the "doctors" probably had no intention of taking it.

Lennox was a real toughie and would kick me in the face when i said hello to him in the womb :)

Despite the hydrops he only had a "club foot" which is a malformation because he was growing in a cramped space and that can be fixed surgically later with a splint etc.

I'm not saying all was well- just that he was strong and i swear till i die he at that moment had the same chances as any premature baby- only the doctor (in a botched late term abortion against my will in a 3rd world country) left him to try to cry and try and breathe with undersized lungs next to the operating table instead of trying to put him into neonatal ICU like any other human being would have done.

My story is far from normal in any sense and goes on farther than I can explain...

Just make sure your husband is with you at the birth as he is the only one you can count on at the end of the day. I'm not going all out against doctors but they are human so there will be great ones, mediocre ones, and downright evil ones.

Sorry if my answers and replies are long winded or eccentric. I'm still dealing with my losses myself.

I guess all will only be revealed when I join my pride and joy in the "next life"...

By the way, I'm with you all the way willing you and your baby on. It maybe a good time to bring up the fact that babies can "feel" a mothers stresses as well as share in happiness and other emotions. So it's not wrong to say that enjoying being with your baby now and making the best of the situation really will help. That positive energy can and will help :)

off topic: I like to think of an remind y'all ladies that you don't carry babies alone - research has shown that fathers are subjected to physical and mental stresses comparable to that felt by mothers. The reasons for this as far as i know are unknown but that's for us guys to know and mothers to find out :) Next time you bite into ice cream and strawberries please allow your other half a cold beer and enjoy your time together with the little one.

Hi-I am looking for help and more insight. I am 30 weeks and my baby has hydrops -(around abdomen and both lungs). We found out at our 22 week ultrasound. They wanted us to terminate and didn't give us much hope. 8 weeks later this baby is still active. They will deliver the baby by 35 weeks to help him on the outside. I am trying to figure out if there is anything I shoud be doing. We were told the shunt doesn't work well because they often pull them out. With having such an active baby I can see how that could happen. BUT doing nothing is very hard. They have tested me for everything and have found nothing wrong except severe hydrops. Around 24 weeks one side of the lungs had regressed the fluid but it came back again. We have done one set of steriod shots and will do another set in the next few weeks.

I am grateful to hear the sucess stories. We are praying for a miracle inspite of what the doctors' keep saying. I am wondering if everyone else with hydropic babies have active babies in the womb. What else can I do to help this baby?

Thanks for your time and wisdom,
Nancy

Dan, your story still upsets me everytime I think about what happened to your amazing baby boy. Just devastating.

Nancy,
It drives me mad that I often hear about doctors saying to parents of hydropic babies what is essentially - 'give up now, there is no hope'. With the wisdom of hindsight I would want to strangle any doctor that said that to me.
As you can read in Lachlan's thread, the shunts CAN work. Why would they not want to at least TRY? What is there to lose? I just don't understand that mentality.
Please keep us posted on your baby's progress.
I am thinking of you guys and your precious bub.

I'd invite Duncan to have a chat but being English he is naturally miserable and would be the voice of Doom! :lol:

Ditto Carrie..... I wanna hear how your appointment went!

LOL that's ok I'm English too so I understand!

Hi Nancy,

I don't know much about the shunts but from what i've read on here they seem like a good idea. I was not aware of them at the time and in retrospect would have probably pushed to have the shunts tried out.

About your babys activity - that actually sounds like good news I think. If the little one is as active as a "regular baby" then that can only be good right? The sign of a struggle or deteriation whould surely be a decreased heart rate / bad rythm and a decrease in activity.

I hope you hang in there and i hope you find out what the unknown thingy is in the neck area. Are the docs sure its not just edema?

If you like and are comfortable with it you could attach and post some scans here. I'm no expert but who knows - maybe someone will view the page and manage to help identify the problem?

All the best!

Nancy!!
First let me say I am so glad you found this site, I have been looking for someone who is going through the same thing as me right now.
I am 20 weeks pregnant, and found out my little girl has hydrops at 18 weeks.

SO IS VERY ACTIVE!!! VERY VERY ACTIVE!! From what my doctor told me, the only time they are NOT active babies is if the are anemic (low iron)... then they remain very still.

The shunts -- my doctor also told me he wasn't going to do them because there just was no hope at all... BUT to make sure that I know that I have done EVERYTHING I could to save my little angel, I am DEMANDING that they put them in. If they come out, I will make sure they put them BACK IN!!!
She also has two cyst like objects on the back of her head, which makes me think that is putting pressure in her throat area and may be the cause of the hydrops. I am going to ask that they remove those cysts. (I'm not sure if they can... but it is worth a shot!)

You have to remember these doctors are use to the idea of terminating pregnancy... therefore they don't think of alternatives, or maybe they just are to lazy to do it. It isn't their baby, it is yours, and the only way we are going to feel at ease if they do not make it, is by knowing that we did EVERYTHING in our power to help them out!

I am praying for you, and your baby. PLEASE PLEASE PLEASE keep me updated, as I am going through the same thing as you, and I would like us to share our experiences as we go!

I want to give you a HUGE HUG!!! Also, here is my email address if you want to stay in touch... carriebethl12@yahoo.com

Praying for your little one!!
~Carrie

Dan,
Thank you so much for all the information you provided! I love the fact that you would talk to your son, and he kicked! So precious! My husband doesn't talk to my belly, I guess he feels weird doing it?!?!? Actually, when she is active in my belly, I always get him to put his hand on me, but then she stops moving completly! My son did the same thing though.

I am trying soo hard to be happy, because like you said she can feel my emotions. It is hard sometimes though... I cry when I feel hopeful, and I cry when I think of what she might have to go through when she is born. This has consumed my life and I think about it all day, everyday.

Thanks again!
~Carrie

Carrie-
From what I read and researched removing the cysts can possible reduce hydrops. I also read about steroid shots helping. We did our first set of steroid shots around 24 weeks. It seems like they are more willing to help once you get to 24 weeks. After the steroid shots the fluid left the right lung area within 24 hours....(could be a coincidence?) BUT returned by the next appointment which was 3 weeks later. When you do a surgery is seems like the baby comes about 3 days later...?? I am a little shy of doing a shut since I know that our fluid returned. The hospital closest to us that actually has experience doing in utero surgery is in San Fransico, California.

I feel like my doctors think the baby won't make it anyways so they are pretty much willing to let us do what we think is best (within reason). This has been the hardest road I have ever walked. At this point we are praying for a miracle. He is so active it is hard to believe he won't be strong enough. It just depends on the lungs, if they had enough space to develop.??? At 35 weeks if everything stays the same we will do a c-section. I have less than 5 weeks to go. Each day brings its challenges. Personally I would look for a doctor that is more positive. I know they have to tell you the worst so they don't get sued. BUT that doesn't mean we have to listen. The best thing that helps me is hearing about babis that have survived. It give me hope. Also taking one day at a time. If the baby is moving today then great!

I will keep you posted.
-Nancy

Nancy,
Thank you for the information about the steroids. I am going to try and get that too. Why don't you try to get the shunts put in when you are 34 weeks? That way if he comes 3 days later, it is still close to when you were going to for your c-section.

I feel the same way as you... I wait every morning to see if I feel her move... I am constantly trying to feel her. Today I thought I hadn't felt her for awhile, but I ate some sweets, and she got hyper!

I am still trying to figure out what caused this. I am blaming everything. I even have thought maybe my pre-natal vitamins were poising her. Also, did you have any antibiotics during your pregnancy? I was put on 2 different kinds, and I am concerned that maybe they had something to do with it.

Anyway, I know this may be difficult to think about, but we are trying to be prepared if we lose her... I have done so much research to make this an easy process for our family. One thing I found, and really want (you may not want this, but just thought I would inform you) is pictures of my baby. There is a company that comes to you for free to take pictures of you and your baby. I'm not sure if you are in the USA but here is the website http://www.nowIlaymedowntosleep.com

And just remember, Good will come out of this... even if you lose your son. Keep your hopes high and try and be positive for him! I already know that I have an amazing testimony from this experience and can't wait to share it with everyone! Our lives have forever changed from this! I pray that both of our babies are miracle babies!!

~Carrie

Carrie-
I can't find anyone in my area who has experience doing shunts. I did find one doctor that would drain the fluid if the baby goes into stress. Which he only does when the baby is longer longer active as a last resort. This is so rare. We are still trying and asking for wisdom.

I have gone through so many emotions. I am a mother of 5 healthy chldren and I try to stay focused on that. Just in the past week my husband and I have decided to think positive as we pray for our miracle. When I went down the other road I just got depressed and didn't want to get out of bed. My daughter asked last night if we will be able to see our baby when we get to heaven. I told her, "we are praying for a miracle and that means we will be changing his diapers and you will be babysitting him." We have already talked to a grief counselor. I just know when I focused on the negative I couldn't function. My regular OB doctor thinks I am putting my head in the sand. But he also didn't think I would make it to 30 weeks with an active baby. So what do the doctor's really know....

Let me know how things are going. I will keep you all posted as well.

Nancy
PS If you are like me, I just read this site for a few months before I registered. Please if you have any experience, join our conversation.

Scary day..... I woke up today and my baby wasn't moving. Last night he was very active like usually. Around 10:30am (on our way to the hospital) I finally felt him kick once so we turned back around. I rested most of the day and after eating I still felt no movement so we went to the hospital to get checked. I was thrilled to see his heartbeat. But apparently it is supposed to go up every once in a while and his stayed the same. It only dropped once. So bacically they sent us home. My doctor's comments to the nurse was "they just want to be able to hold their baby". Which sounded to me like he didn't plan on us taking him home. Ours is supposed to be the best doctor that hospital has. The regular OB on call didn't even want to touch our cased.
Tomorrow we will get more aggressive and do another set of steroid shots and try to get into the doctor up north who actually has some experience with draining the fluid. He is usually so active I have not had to worry..... this is te first time his movements have stopped since we found our about hydrops over 8 weeks ago. I want to do everything possible to save our baby. I am 30 weeks and 4 days today.

Any thoughts or ideas??
-Nancy

Wow! That is my worst fear. But I am glad that he started to move!
I think you are doing everything right... just be aggressive with the doctor, and make sure they know what you want. Try your hardest to get the shunts put in!!! Right now that might be enough to save his life! In your first post I felt like you were giving up. I was glad to hear that you are still looking into the shunts.

Where do you live? I can help you reasearch more doctors... I have been posting on babycenter.com and a lot of people in different areas have been suggesting doctors in their area that specialize in hydrops cases.

Just make sure you are doing everything in you can to feel like you tried to help him. Other wise if he doesn't survive you are just going to blame yourself!

Let me know how this round of steroids goes!! I go back to my doctor a week from today, so I won't find out if I can get them until them.

~carrie

The only thing I would say is push to get treatment as quickly as possible, which I'm sure you are already doing. Especially if baby's movements are decreasing. I know when my polyhydraminious increased and we went for a checkup the specialist advised me to have treatment (shunt op) ASAP.... ie. within the next few hours of my appt. They didn't want to wait any longer with the organs under so much pressure.
Hope you can get all the help you need from your new doc. xx

oops I can't spell..... :roll:
polyhydramnios

NANCY!! Is everything ok? I haven't heard from you, just want to make sure you and baby are still doing well!!

Still praying.
~Carrie

Hello Carrie,
My name is Dottie. I was told at 28 weeks preganat that my son had Hydrops. The doctors told me that most likely he would not make it. They gave him a 22% chance to live. I ended up in the hospital at 32 weeks along I got sick so they had to enduce labor. My son was born at 32 weeks very sick. The build up of fluid around his organs caused him many problems. He could not breathe on his own, his liver was not functioning properly, kindney's were not working right, he had trouble eating fed mostly through IVs at first, he had sacs of fluid on his neck, a small blood clot in his heart, and 4 cysts on his brain, And many other problems. He spent 104 days in the hospital with a couple close calls. He did have a surgery before leaving to help with his digestion problems. The doctors never knew what caused his Hydrops. They thought it might have been his Lymphatic system but to this day still do not know for sure. Anyway, during this I was scared OH I should have mentioned that I was 17 years old. Not only was I having a baby young I was having a sick baby. Well this was 12 years 4months 2days ago. My son now is a healthy 12 year old. I'm so greatful that I did not give up hope because my boy is wonderful. I know that situations can be different but it sound like we have all heard pretty much the same thing. Although it seems there are some procedures they can do now that they never mentioned to me back in 96. So keep praying thats what hepled me. I just found this site last night so I have not been following all of the blogs but I thought I would share my story with you and encourge you and your family to stay strong and that there is hope. God has the final say not the doctors.

Dottie
[attachment=2]Shawn Sick.jpg[/attachment][attachment=1]shawnfoot ball.jpg[/attachment]

Dottie!! Wow I thought you were going to say your son didn't make it. I am so glad he is still with you and healthy! Thanks for sharing the pictures too!
It really helps me get through the day hearing amazing stories like yours!! Tomorrow is our next appointment!! I am really nervous!

I will post an update tomorrow.

~Carrie

Hi Dottie,

That is awesome! What an amazing recovery! Would you mind to spend a few moments to share with others here on the topic of long term effects (if any) - if you check out some of the other topics quite a few parents are looking for info.

Thanks for posting your inspirational experience! Say hi to your son :)

Dan

Hi Carrie,

I hope you appointment goes well! Thanks for keeping us posted... wow you really found allot of support here in this topic! I'm glad!

Dan

UPDATE!!!
Hello everyone!!

So today's appointment went well. Viviana still has fluid in the same locations (under her skin, and around her lungs). We PRAISE, PRAISE, PRAISE God that her condition has not gotten worse!
We had so many questions for the doctor, and he was very patient and listened to our concerns. He feels strongly about not putting tubes in her lungs, he thinks it will only make her condition worse (causing more pressure on the outside, and in result will put more fluid in her body) So we have agreed with him NOT to do the chest tubes.

MORE PRAISES!!! The doctor is willing to give me steroid shots after 24 weeks (I will be 22 weeks on Wednesday). This will help her lungs develop. He as also agreed that if the pregnancy lasts past 30 weeks he will remove the fluid with a needle. However, it is VERY common for the fluid to come back.

Viviana was so active during the sonogram; they all said "SHE IS FIESTY!"

Thank you all so much for all the prayers this weekend! Next appointment is 2 weeks from today!

~Carrie

Hi Carrie,
That is great that Viviana's condition is not worsened. When I was preganat with Shawn they would not drain any fluid with him in the womb. My specialist said that it was really risky.
It is great that they are going to give you the shots too. Those really help lung development. I did not get my shot until 2 days before my son was born, so I'm not sure how much they helped him.
I know that when Shawn was born there was not a lot that they could do to help him. It was a one day at a time thing. They did drain fluid from his abdomen and neck with a needle, and at first it did come back, then it was gone.

I'm going to ask my church to pray for you as well as the others on this site. Miracle's do happen I have a Son to prove it. God bless you and your family and expecially baby Viviana!

Dottie

Carrie-
I am not sure if you want to hear from me or not... I am switching over to the other forum. My only advise now is if your baby stops moving get aggressive. We did not get our miracle. That doesn't mean you won't so DO NOT give up!! Stay focused on the miracle stories. I will post more when I am able. I will praying for you as you walk this challenging road.
-Nancy

Nancy, I'm so sorry :(

Nancy ~ I am so sorry to hear this! When you have the strength, please post what happened! Not only so I can look out, and learn from your experience, but so that people who are going through this in the future will be aware as well!

I am praying for your family! Please try and stay positive during this time. I am sure your baby touched so many lives (including mine). Praise God for the many healthy children you do have!

If you need anything, please let us know!

~Carrie

Update... 24 weeks pregnant

Hello everyone....

Well, everything seems to still be the same. The fluid under her skin was a little more pronounced this time... but the fluid in her lungs looks the same.

She was extremely active again! Hyper little thing! We got a great shot between her legs... there is no denying It's a Girl!!!

Next appointment (in two weeks) I will start Steriod shots to help her lungs develop.

Thanks for all your prayers and support!

~Carrie

Carrie-
I am glad to hear things aren't getting worse. They tried to get me to terminate before 24 weeks and I said no. Even though we didn't get our miracle I would not have changed that decision. I did have to experience the worst thing in my life-stillborn yet survied (sort of). I am praying for a miracle for your family!! Focus on the good stuff and the success stories. Stay strong. Research all you can and make the best decisions possible. Keep us posted!!
Nancy

Hello all...
We just got back from our Bi-weekly Dr appointment. Unfortunately, Viviana is getting worse. The fluid is building up more, and more every time we get an ultrasound.
Also, I have also had an excessive weight gain, contractions and swelling... this is all due to the fluid in my uterus. I have developed too much fluid (condition call Polyhydramnios) which can put me into pre-term labor. The Dr. gave me some meds to take to see if we can control the fluid... if not, they will have to go in and remove the excess fluid from my uterus. I will go back Thursday to see if the meds are working or not.

Steroids shots have been put on hold until the Polyhydramnios is under control.

I will post an update again this week after Thursday's appointment! ~Carrie

I am thinking of you and praying that Viviana can hold on and things look better on Thursday.

Hi Carrie,
I'm sorry that you got not so good news. I will continue to pray for a good out come.

Dottie

Hi Carrie

Be strong friend. Positive thoughts coming your way from myself and family.

Janee Veigel

Hi There

I have just read your post and felt compelled to join so that I could respond!

My daughter was stillborn at 28 weeks gestation. She had been suffering with servere bilateral pleural effusions, severe ascites and severe skin edema. She was diagnosed at 19 weeks gestation. All her tests were normal, all her organs were fine. She bravely fought for 9 weeks, but here heart wasn't strong enough to go on.

We were told that there was no hope, but we decided to fight on anyway. We had shunts inserted 3 times - the first failed, the second worked, and the third led to her death.

The reason why I am telling you this is because one thing I have learned from this experience is that you have to be strong and stand up to those doctors. We may have lost our fight, but I got to hold my beautiful daughter and give her a proper funeral - something that was very important to both me and my husband.

Just because they say something, doesn't mean they are always right - just take a look at some of the stories here. If your own hospital won't do what you want, go somewhere else. We didn't trust our local hospital so we made them refer us to another.

You may not get the outcome you want - I never - but if I had to I would do the same thing again. I couldn't give up just because they told me to.

BabyC-
Thank you so much for posting!!! It sounds like our little girls have the exact same condition... only difference, my doctors will not give me shunts. Where do you live... I ask because my Doc said that NO BODY in the USA is putting shunts in anymore because they lead to death.

I am trying so hard to stay strong... but I find myself crying every day. I just seems like everything keeps getting worse and worse, and nothing is being done about it. At the last ultrasound her poor little skull was about the size of a lemon, and the skin edema around her head looked like the size of a softball.

I just don't know what to do anymore.

Hi

I live in London, England. I had the shunts done in 2 separate hospitals over here. The first set didn't work, so I had myself referred to Kings College Hospital London to see Professor Nicolaides. His shunts worked the first time (the fluid almost totally went), but unfortunately they became blocked and by the time they did the third set, she was too ill to survive. I firmly believe had the first set worked, it would have been a completely different outcome.

Now, with regards to doctors in the USA, I did contact a chap at Mt Sinai Hospital, his name is Greg Ryan and his email address is - gryan@mtsinai.on.ca. He was very helpful, so it may be worth contacting him. Or, contact Professor Nicolaides at Kings and ask if he knows someone that can help. His PA's address is niki.pepes@kch.nhs.uk. Email her and ask her to pass your message on.

I hope this helps.

Hi

I've just been speaking to my husband and he reminded me that we also contacted a doctor in Denmark - her name is Connie Joergensen email: connie.joergensen@rh.regionh.dk. We had been researching possible treatments when we first found out about our daughters condition. We read about a drug called OK-432 or PICINABIL. This is a drug that is being used in Denmark to treat Pleural effusions. Dr Joergensen said this treatment is most successful in isolated effusions, but that it could work on cases such as my daughter's. Unfortunately, the drug is not licensed over here in the UK, and so we weren't able to have it.

Maybe you could ask your doctors if they can give you this drug - they inject it in to the baby's lungs. One thing that everyone seemed to be in agreement on is that early treatment gives the best chances of survival, and more so if ascites is absent or very minimal. I'm not going to give you false hope, but in our daughters case she had very severe ascites, skin edema and bilateral pleural effusions which drained away, with the aid of bilateral shunts, within a week. Unfortunately the shunts became blocked again and my daughter became too weak to carry on.

Sorry I didn't send an update earlier... a lot has happened in the past 48 hours.
Wednesday night -- I was told to go to the Hospital because I was having 6-10 minor contractions an hour. They wanted to monitor the baby for about 25 mins. Well, I ended up being there for 6 hours. Viviana's heart rate was dropping... or dipping every couple of minutes. They did an ultrasound, everything looked fine. They also looked to see if I was in pre-term labor... I was not.

Thursday's Doctor appointment went well. Viviana's fluid's are still very high. The polyhydraminos in me has gone down a little bit, which the doctor was happy about. He took me off my medicine for now. We have an appointment to see him again next Thursday.

Today - I got back in contact with the old Dr. in Tampa that originally told us to terminate the pregnancy because there was no hope. Well, he is willing to work with us now. We will be forwarding all of our current ultrasounds to him on Monday. He is going to evaluate us again, and if he feels the chest tubes in the baby will work, we will be in surgery as early as next Wed. or Thursday!!!!

So many Praises!! I will keep sending updates as they come!

BABYC --- THANK YOU SO MUCH FOR THIS INFORMATION... I contacted Dr. Ryan at Mt Sinai Hospital... he is the one that put me back in contact with the Dr. in Tampa... he forwarded my email to him and I got a phone call this morning!! I can't thank you enough!!

~Carrie